Abstract P2-08-01: Engaging breast cancer survivors in the United States in research: clinical characteristics and demographics from Susan G. Komen’s ShareForCures® first cohort

Abstract Background: Lack of diversity in research and reliance on small, siloed datasets limits the availability of real-world evidence, hampering the practice of precision medicine and optimization of treatments and care for all breast cancer patients. To address these limitations, the Susan G. Komen® breast cancer foundation launched ShareForCures® (SFC). This online, IRB-approved, patient-centered breast cancer research registry engages breast cancer survivors and patients from diverse backgrounds as research partners. By facilitating the exchange of information between survivors, patients and researchers, SFC aims to drive innovative breast cancer research and improve outcomes. Guided by focus groups and pilot testing, SFC began enrolling adults living in the U.S. and diagnosed with breast cancer in July 2023. Methods: We implemented a mixture of tactics to recruit eligible individuals to SFC. Emails, earned and paid media, digital advertising, social media posts, blogs, and in-person events were used to spread awareness and educate individuals about the registry. Potential participants could connect with the SFC team via contact forms, email, and phone for assistance. To fully onboard, participants had to register by creating an account in the SFC online platform, accept the informed consent and medical records release forms, and complete the “About You” survey. We implemented tailored communication strategies to aid potential participants in completing the onboarding process. Once fully onboarded, participants were assigned tasks to provide additional data: surveys (quality of life, family health history, social determinants of health), medical records, and a saliva sample for germline whole genome sequencing were collected. Integrated data from the first cohort of SFC participants were analyzed to evaluate recruitment and engagement efforts and to provide descriptive statistics. Results: As of June 26, 2024, 773 participants registered, with 399 fully onboarding (median age = 56 years [range: 27-82], 99% women, 81% non-Hispanic White) and 31 declining (92% participation, average of 33 enrolled/month). Most participants (92%) enrolled with no assistance, and only 3 withdrew after completing enrollment (99% retention). Participants were geographically dispersed across 86% of U.S. states. Fifty percent of participants were from communities historically under-represented in biomedical research. Most participants self-reported their first breast cancer diagnosis as invasive ductal carcinoma (61%), with 39% self-reporting ER+/HER2– disease and 77% reporting early stage (Stage 0, 1, or 2) disease. Participants also self-reported living with metastatic breast cancer (17%) and experiencing a recurrence (19%). At least one survey or data collection activity (saliva or medical records) was completed by 62% of participants (45% saliva samples, 35% medical records collected). Conclusions: In the first year of SFC, we recruited breast cancer survivors and patients from across the U.S. using a variety of broad, direct-to-patient methods, and participants remained engaged with the registry through completion of surveys and data collection activities at or above expected rates. Continued focused recruitment of participants from communities historically under-represented in biomedical research is still needed. Participants’ breast cancer diagnoses were consistent with national prevalence estimates, with an over-representation of metastatic breast cancer in SFC. Citation Format: Jessica Epps, Emily Marks, Carlita McIlwain, Natalia Ballón, Taylor Jennings, Natalia Iannucci, Brady Kazar, Natasha Mmeje,Victoria Wolodzko Smart, Kimberly Sabelko, Melissa Bondy, Jerome Jourquin. Engaging breast cancer survivors in the United States in research: clinical characteristics and demographics from Susan G. Komen’s ShareForCures® first cohort [abstract]. In: Proceedings of the San Antonio Breast Cancer Symposium 2024; 2024 Dec 10-13; San Antonio, TX. Philadelphia (PA): AACR; Clin Cancer Res 2025;31(12 Suppl):Abstract nr P2-08-01.